We don’t have any fluorescent light in the house, with the exception of the kitchen, which has these four rows of those banks of bulbs behind plastic translucent sheets. One of the things that I would like to do, once there’s money to do so, is to tear those out and install some incandescent down lighting.

On another note, I wanted to say thanks for those folks who have supported the site by using the amazon links (you don’t have to purchase the stuff shown as long as you start your search through the link) and those of you who check out some of the cycling advertisements. It’s pennies here and there but they do add up. Thanks!

Fluorescent Light Bulbs and People with Lupus

Some reports suggest that there may be enough UVB radiation in fluorescent light bulbs to cause photosensitivity in people with lupus. Are you one of the people affected by fluorescent light bulbs? Please share your story with us at advocacy@lupus.org.

This has been one of those things that just dumbfound people when they see it. Jenny is super sensitive to fluorescent light. She will usually turn red and rashy within about ten minutes of stepping in a Target.

Oddly enough, the most dramatic example of this reaction happens in the doctor’s office. Those small brightly lit rooms make my wife butterfly almost immediately. I remember that some of the doctors were amazed at how quickly it happens. One doctor actually turned the lights out and then went to get a colleague in order to show him how quickly it happens.

I’ve seen articles about how we will eventually move almost entirely to fluorescent because of the impact on the environment. I wonder how that will affect my wife. Not only does she butterfly but she also tends to get headaches from the fluorescent lights. Maybe the technology will get better and the spectrum of light will be a bit more friendly for light-sensitive lupus patients.

If you have had any experience with this, I do encourage you to share your comments here and email
the folks at the LFA at advocacy@lupus.org.

It’s very frustrating when your specialist is two hundred miles away and doesn’t always respond to phone calls.

It looks like a chemical burn, but she hasn’t handled any chemicals.

After writing all those suggestions last month about being prepared to go to the doctor or emergency room, I was kicking myself yesterday for not having information about all of Jenny’s doctors. She had just had an MRI and was pretty sedated, and they were asking about where to send the information. I should have that information with me in my wallet, but I don’t. I’m going to try and figure out some way to do that without making my wallet look like a Big Mac. I’ll let you know what I come up with.

Jenny was recently sent some sun resistant clothes to try, and she likes them a lot so far. I’ll let you know more soon. I’m really glad summer is on its way out. The sun makes Jenny’s lupus flare like crazy.

I promise to write something useful soon.

Between the altitude, the bad air quality, and the amount of sun, my wife had a really hard time on the trip. I don’t think I dealt with it very well, either. I try and stay positive, but I don’t think I did a very good job on this trip. It’s so frustrating to see someone you love be miserable.

We were at the lake, and I was out in the very very cold water while the kids were playing on the beach, and Jenny had to stay covered up in the quickly fading shade. I knew she would much rather be out in the lake, and it just made me sad to see her all alone with her big hat, reading a book. She shouldn’t really have been out there at all, but she knew how much it meant to the kids to go to the beach. I just don’t know what to say in times like that, and so I don’t say anything.

Honey, I’m so sorry that you have a really stupid disease.

I can’t tell you how many times I’ve said that to her. I don’t know what else to say.

According to the Arthritis Pain Cure Center,

Scientists think that ultraviolet light (which is in sunlight, fluorescent lights, photocopiers, and VDUs) create antigens (protein molecules) on the skin surface which react with antibodies. The antibodies cause white blood cells to be drawn to the skin and attack it and a rash appears. The redness and inflammation may also be due to excessive nitric oxide present in the skin after lupus patients are exposed to sun. In lupus, sun is more likely to cause problems than artificial sources of light.

The UV rays in sunlight causes damage to the skin (keratinocytes), resulting in sunburn. In normal people, the sunburn goes away because the dead skin cells get cleared away quickly. In lupus, sun causes the damage to skin cells but the cells are not cleared away very well. The releases of the contents of the cells cause inflammation. In addition, the cell contents, which include Ro, are able to cause an immune response. The immune system responds to the cells by creating autoantibodies which attack the skin.

We have talked about tinting the windows in our car, but it is somewhat expensive, and we have been told that some tinting may be illegal. We have purchased some clothing that is extremely UV resistant, but it doesn’t get worn often because, well, it’s not very pretty. I swear someday that we are going to have a vacation where we sleep during the day and go out at night.